BILL NUMBER: SCR 75	CHAPTERED  05/18/00

	RESOLUTION CHAPTER   64
	FILED WITH SECRETARY OF STATE   MAY 18, 2000
	ADOPTED IN SENATE   MAY 16, 2000
	ADOPTED IN ASSEMBLY   MAY 8, 2000
	AMENDED IN ASSEMBLY   MAY 8, 2000
	AMENDED IN SENATE   APRIL 13, 2000

INTRODUCED BY   Senators Lewis, Alarcon, Alpert, Bowen, Burton,
Costa, Escutia, Figueroa, Hayden, Hughes, Johannessen, Johnson,
Karnette, Kelley, Knight, Monteith, Morrow, Mountjoy, Murray, Perata,
Rainey, Speier, and Vasconcellos
   (Coauthors:  Assembly Members Aanestad, Ackerman, Alquist, Aroner,
Baldwin, Bates, Battin, Baugh, Bock, Brewer, Calderon, Campbell,
Cardenas, Cardoza, Cedillo, Corbett, Correa, Cox, Cunneen, Davis,
Dickerson, Dutra, Florez, Gallegos, Granlund, Havice, Hertzberg,
Honda, House, Jackson, Keeley, Knox, Kuehl, Leach, Lempert, Leonard,
Longville, Lowenthal, Machado, Maddox, Maldonado, Margett, Mazzoni,
McClintock, Nakano, Olberg, Oller, Robert Pacheco, Rod Pacheco,
Pescetti, Reyes, Romero, Runner, Scott, Shelley, Steinberg,
Strickland, Strom-Martin, Thompson, Thomson, Torlakson, Vincent,
Washington, Wayne, Wesson, Wildman, Wright, and Zettel)

                        MARCH 29, 2000

   Senate Concurrent Resolution No. 75--Relative to Friedreich's
Ataxia Awareness Day.


	LEGISLATIVE COUNSEL'S DIGEST


   SCR 75, Lewis.  Friedreich's Ataxia Awareness Day.
   This measure would proclaim May 20, 2000, as Friedreich's Ataxia
Awareness Day.




   WHEREAS, Friedreich's ataxia is an inherited, progressive
neurological disorder, usually diagnosed in childhood, that causes
muscle weakness and loss of coordination in the arms and legs;
impairment of vision, hearing, and speech; scoliosis; diabetes; and a
serious heart condition.  Most patients need a wheelchair full-time
by their twenties and, in later stages of the disease, many become
completely incapacitated.  Life expectancy is reduced to early
adulthood.  There is currently no effective treatment or cure for
Friedreich's ataxia; and
   WHEREAS, Although there is no treatment or cure available to
Friedreich's ataxia patients and families, they have more and more
reason for real hope.  An extraordinary explosion of research
findings has followed the identification of the Friedreich's ataxia
gene in 1996.  Since that discovery, research scientists have learned
a great deal about the disorder.  They have identified and analyzed
the protein that is deficient in these patients, and determined that
the deficiency results in faulty iron metabolism, reduced
mitochondrial function, and cell-killing oxidative stress.
Scientists have also developed model Friedreich's ataxia systems in
lower organisms and are testing these systems in human cell cultures
and patients.  Therapeutic clinical trials of promising drug
compounds are now underway, with encouraging preliminary results; and

   WHEREAS, Investigators are increasingly optimistic that they are
drawing closer to understanding more fully the causes of Friedreich's
ataxia and to developing effective treatments.  Of course, the
impact of a breakthrough in this disorder will not be limited to
Friedreich's ataxia.  As the Director of the National Institutes of
Health (NIH) recently reported to the Congress, "As with progress in
many rare diseases, what we discover about cellular changes and
therapeutic approaches in Friedreich's ataxia may lead us to
important insights about more common disorders"; and
   WHEREAS, Within the NIH, the National Institute of Neurological
Disorders and Stroke (NINDS) has primary responsibility for
sponsoring research on Friedreich's ataxia and the other neurological
disorders.  The NINDS conducts research on Friedreich's ataxia and
other forms of inherited ataxias at its facilities at the NIH and
supports additional studies at medical centers throughout the United
States and elsewhere; and
   WHEREAS, Augmenting these government-sponsored efforts are
programs supported by patient advocacy foundations and industry.  The
intensifying cooperation among these various sources of support for
this research and the multidisciplinary efforts of thousands of
scientists and health care professionals, provides powerful evidence
of the growing hope and determination to conquer Friedreich's ataxia;
now, therefore, be it
   Resolved by the Senate of the State of California, the Assembly
thereof concurring, That the Legislature hereby proclaims May 20,
2000, as Friedreich's Ataxia Awareness Day; and be it further
   Resolved, That the Secretary of the Senate transmit copies of this
resolution to the author for appropriate distribution.
